TToT: Not Permanence But Flux, #Thundersnow #AWrinkleInTime #WomensHistoryMonth #10Thankful

March weather patterns have introduced me to something known as
thundersnow
as an occurrence of the season.

Oh March…silly month.

This week’s thankful post I want to dedicate to women and those who’ve made my life with kidney disease as good as it is now.

Even if I think, locally and in politics, women lost, again, to men. Still, I am thankful for ten other things, at least.

Ten Things of Thankful

I’m thankful I got to know my uncle.

Before my list of intelligent, strong, and brave women can commence, I must pay tribute here to an one-of-a-kind man.

I wouldn’t start off a post like this normally, in any other case, but my uncle died at the start of the week, after suffering a stroke and I wanted to acknowledge him in my TToT list.

He was my father’s older sister’s partner and he was like no one else I’ve ever met.

He invited my family and I into his home, not knowing us, and let us return several times. We grew closer and always enjoyed catching up.

He is gone and it’s the end of an era. RIP Uncle Jim.

I’m thankful for audio described Downton Abbey episodes.

Lots of strong women in that series, even and especially for the time they were living in, even as fictional characters that represented many women who were real.

I’m thankful everything I took from the show helped me take some necessary and tough steps in my own life.

From 1925, to remembering a hard decision made this day back in 2011 to 2018 and all.

I’m thankful for the progress made since 1964 in Canada.

I’m thankful for a history lesson brought to life and with powerful true words from the author.

She battled depression, rejection, and sexism, only to write Anne of Green Gables and nineteen other novels in her lifetime.

https://www.lmmontgomery.ca/laura-robinsons-reflections-lm-montgomery-heritage-minute

Whether it’s the early 20th century, in the UK or in Canada, it couldn’t have been so easy to speak out about women’s rights. For Lucy Maud Montgomery, she had a lot up against her and yet she created a totally feminist character in Anne Shirley and in dozens of other strong female characters throughout her career as an author is a testament to who she was.

I’m also thankful, then, for female writers and scholars in today’s world, those who have written extensively on the women of history, here in Canada and beyond.

I’m thankful for a Canadian female from the country’s history books (or should be and now will be) appearing on the $10 bill.

http://www.cbc.ca/news/canada/nova-scotia/viola-desmond-10-unveiled-1.4567290

I’m thankful for the females winning big at the 2018 Canadian Screen Awards.

Margaret Atwood won an award for the mini series Alias Grace being adapted to television. The new Anne program won an award for best television drama series.

I love/loved both.

I’m thankful for a powerful female voice from a friend.

Watching ‘A Wrinkle in Time’ is a political act – CNN

And I’m thankful, Sade is back with a new song for the soundtrack.

https://www.youtube.com/watch?v=m7b8hitvfoE

Sade is one of my favourite women and artist/performers.

Happy International Women’s Day and Happy Women’s History Month to all the strong women, in my life, in my world – past and present, real and fictional.

Silence Is Acceptance, #MeToo #HolocaustMemorialDay #JusJoJan

There are many things I would like to speak about, on an ongoing basis. Listening to stories of survivors of the Holocaust, their strength and bravery in speaking on such horrid things, makes me feel like not enough is said as of yet, from all of us and that we all must say something.

There are a lot of things going on, past and present, that I’d like to
address
and then something stops me from saying anything at all. Fear, but of what?

Just Jot It January, #JusJoJan

I am stuck on the Holocaust and I have been for a long long time. I take breaks from thinking about it, to preserve my sanity, but ultimately this historical event creeps back into my thoughts. I am lucky I can take those breaks. I didn’t experience it, though I know many who did have gone on to live perfectly wonderful lives. It feels haunting, even if I often wonder how I’d have moved on if it had happened to me.

I want to speak on things, to write about them, to make sure people don’t forget. Mistakes are repeated. Humans are doomed to repeat what once was. We can’t seem to help ourselves.

If I speak up on such things, I am told I worry too much, as if I am supposed to forget that if I had lived during the time of World War II I would be considered a waste, as one of the disabled.

Yes, if I’d lived in Europe during that time, if I lived anywhere back then, and even if I lived here, years ago, kidney disease would have killed me.

Morbid, perhaps. Speaking up, or addressing the things that haunt my mind, this unsticks those cobwebs from the furthest corners of my brain.

I am lucky to have an address and a roof over my head, even if my heat does keep crapping out on me. I am lucky to be living in 2018 and celebrating that I was born after the inventions of dialysis and organ transplantation.

I saw Nazis marching in North America, I hear that Poland just made it illegal to mention Poland’s involvement during the Holocaust, and I wonder what to say, what I can say about these furious subjects.

I see people are saying things aren’t so bad, and they aren’t really, but they are for some people and they could be, any day, for more of us. We need to stay vigilant and on guard to halt dangers from reoccurring.

Sexual misconduct and resignations as a result are happening in Canada, in Ontario politics now too. Forget presidents and porn stars. This is not so hard to get, is it?

The men who complain this is going too far, that they can’t even talk to women now, make me want to bang my own head against the wall repeatedly.

Pop culture. Politics. Personal space. Is it really so hard for men to not act inappropriately with women and young girls? Really? Reeeeeeally?

It is maddening. I want to keep addressing all these things, to make people get along, and to practice tolerance and compassion. What is it going to take?

TELL ME!!!

Here Comes the Diet Police #Nutrition #AtoZChallenge

Oh no. Here comes the dietician.

So many doctors. So little time. It’s the dreaded diet doctor, who has come to lecture me on what to eat and what not to eat.

The A to Z Challenge – N is for Nutrition

From the moment I was diagnosed with kidney disease, I began to see doctor after doctor. One specialist I would see would be the one with all the expertise on nutrition.

I had low calcium. I had low iron, anaemia. I needed to take supplements. I was put on dialysis. I was under weight and malnourished. My body wasn’t getting any of the proper nutrients it needed. The kidney disease was preventing anything healthy from happening in my body.

From then on I saw the dietician, who told me what foods to stay away from. Then, once I’d had my kidney transplant, I saw one again, who told me I was to basically eat the opposite of all I was to stay away from while on dialysis.

It was confusing. It was confusing, going from fighting to keep any weight on to being on high doses of medications which put on weight.

Food has been a major factor for me, something I had to think about, since I was eleven years old. I fought like hell to be healthy, but I never dreamed that nutrition would be such a difficulty for me.

Now, I am on such low doses of those transplant medications, but the damage has been done. My body has been through a lot.

I try to find balance. I love salad and I love chocolate. I could live on fruit and vegetables, but I love my pizza. I love to drink water and still I drink Coke.

This nutrition thing is hard and I don’t see it getting any easier, the older I get.

***This is my first year of joining the A to Z Challenge and so I’ve decided to post randomly, as a way for new visitors to my blog to get to know me a little better. I look forward to discovering some interesting new blogs too.

Salty Sweet, Bittersweet #TGIF #FTSF #pieceOfCake

My father was never the beer drinking father, like most kids had. He was the Coke drinking father who was always available to be designated driver.

“Can me and Brian split a can of Coke?” I would shout from the top of the stairs, down to my parents in the basement. We always had Coke in the house, or practically always, but I still always felt like I must receive permission from my parents to have any. I like to think I had a healthy respect for them, most of the time, asking before taking. We had a good life, but our parents taught us a healthy gratitude for everything we got.

One of us would get the can and the other, they would get the half of the can poured into a glass. It was often the two of us, brother and sister against the world.

When I was 11 I was like any other kid my age, growing up in the mid nineties, and wanting what we call, in Canada, not soda, but pop. I loved sugar, but I also craved salt.

I began to sneak those fast food restaurant salt packets. I would eat the salt off of Pretzels and I even sprinkled salt on my potato chips because they weren’t salty enough.

How many eleven-year-old kids crave salt? It would have been a tough choice, at that age, between a can of sugary pop or a bag of extra salty snacks, but, at a certain point, around age eleven, the salty snacks would have won. By necessity. Something in my body needed, demanded it.

This is what would change my life forever. I had been born blind and lived that way, just another part of who I was. After my eleventh year, there was no denying that something was very wrong.

It’s been more than twenty years since that eleven-year-old craved sugar and so much salt. My kidney disease was growing worse. The nausea was increasing. The fatigue was putting me in bed right after dinner, almost nightly, feeling so weak and unable to run and play like I’d always done, like kids did.

This was the year after I celebrated my tenth birthday, with friends at McDonalds. (A paradise and a sugar/salt lover’s dream come true.)

After the year of the Beverly Hills 90210 poster and the Mariah Carey cassette given to me for my tenth birthday…I was not well as my next few birthdays came and went. I was not expecting to spend so much time in bed, on the couch, unable to eat anything other than that salty, processed, packaged chicken noodle soup made in a pot on the stove.

Bowls and bowls of the stuff were consumed by eleven-year-old Kerry.

I will never forget what it felt like to be eleven and drifting away from any semblance of a normal childhood. The next few years would be trying ones, but I am who I am today because of it all.

Both the salty and the sweet, bittersweet memories of a childhood, never boring.

This was more of the story I’ve been writing for twenty years, the one I want to continue writing, from the year I was eleven and unwell. It was brother and sister, always, and my brother would follow my footsteps, getting sick like me, three years later when he turned eleven.

This was the prompt for
Finish the Sentence Friday
this week.

Kristi, the orchestrator of all of this, she gave me the idea to start with the can of Coke. Read her post by clicking on the link above to see where I drew tonight’s inspiration for the prompt.

What were you doing when you were eleven?

TToT: Relax! It’s Only A Cane – Daylight Savings, #10thankful

I walk around like this all the time now, trying to defuse situations where there could be some fear going on.

I tell them they can relax, that it’s only a white cane. I won’t whack them with it, not on purpose or very hard anyway, just as long as they stay in line.

I suppose, it would have made even more sense if I’d actually been holding the object I am speaking about. I should have taken another one, one where I’m actually holding my white cane in the photo.

Ten Things of Thankful

I am thankful for this t-shirt.

Abigail Style

I like how Steph of
Bold Blind Beauty
has gone the extra mile, trying to spread the message of strength and empowerment that a lot of the slogans on the shirts, bags, and mugs she has created show the world.

I am always happy to help spread this message with Steph. I chose this shirt because I myself still battle the feelings I have about my white cane. I know how others see it, don’t always understand it, but I don’t want it to make people wary. I just want to be able to use it to see more of the world safely.

I must admit, I do enjoy its sarcastic tone though. It’s my kind of humour.

I am thankful my friend Kerra was challenged to post any 80s song, for an entire week, on Facebook and that I took on that challenge from her.

I will include, throughout this TToT post, the seven songs I chose.

Everything In My Heart

Corey Hart, 1985

I am thankful I received a payment for work I did.

I have a lot of feelings around trying to contribute, to develop a career for myself, but in the arts nothing’s a sure thing. All my insecurities about not feeling useful have followed me for years, and I know this is just one fairly small amount, but it’s a big deal to me. I wrote something and I was paid for that service I provided. I created something and I am glad it was so well received. I hope to build on this.

Never Tear Us Apart

INXS, 1987

I am thankful for an awesome first meeting of Mya and her cousins.

It was so sweet, the way my niece and nephew wanted to hold their new little cousin, how they doted over her and were so gentle…yet so very excited.

He is not the youngest of the group anymore.

Mad World

Tears For Fears, 1982

I am thankful for a day to celebrate women.

People Are People

Depeche Mode, 198

This song fits the theme of the day. We are all just people, so why does misogyny continue on such a level as we currently see?

I wrote a piece, and the debate about what feminism is or isn’t or if it’s a good or a bad thing could go on forever, but I think International Women’s Day should just be a day to celebrate women and girls, and how far we’ve come, and are still going.

I am thankful for all the lessons having kidney disease has taught me in the last twenty years.

March 9th is World Kidney Day and every year I reflect on all that my journey through kidney failure taught me, the bad and less so.

I still want to write more extensively on that time in my life. I struggle to know how to go about this. I could blog about it forever, but a book is still my goal.

Now that I’m arriving at the 20 year mark, 1997 being the year I was taken off dialysis and went on to live with a working kidney once more.

World Kidney Day is to educate people on the symptoms of kidney failure, but mine was a bit of a unique case. It’s about my gratitude that I had good doctors and that a medical treatment like dialysis even exists, because without it, I don’t even like to think.

I Can’t Stand The Rain

Tina Turner, 1985

I am thankful for a chance to hold Mya while she slept.

Whenever You Need Somebody

Rick Astley, 1987

She sat and slept upright, wouldn’t straighten out any, so that’s how she stayed. I felt her steady breathing, in and out, and her faint newborn sounds. I didn’t sleep, but it was as close to a peaceful state as I have felt in a long time.

It was a feeling I never wanted to end, but eventually, the newborn must eat.

She is just so sweet though, like a little doll.

I will always be here for you Mya, whenever you need somebody, because what you’ve given me, in only the first few weeks of your life, this is impossible to calculate.

I’m thankful for more perspective on the state of racism today, with an in depth documentary that aired on TV here in Canada the other night.

One movie can’t end racism in Canada — but ‘The Skin We’re In’ will fuel the fight

Canadian journalist Desmond Cole has been an outspoken face for racial issues in our current climate. He pushes the limits, which is what good journalists do, but he has a deep personal iron in the fire that still burns, the tension that’s often revved up by events in the news, but he has experienced racism himself.

I have not dealt with racism, but I have experienced ablism. I try to understand because I know what it’s like to be judged on appearance. That’s how most people judge, on meeting someone, as the visual is the first thing most people have to go by. It’s far past the time to quit judging without hearing the individual stories first.

I am thankful for a violin lesson that focused on the art of practicing.

My teacher showed me some helpful techniques for the days I am on my own, but worrying I am setting myself back instead of making progress, by the ineffective practicing I may be doing.

CURING UNSTEADY TEMPO SYNDROME

I have felt like I am stuck, unable to overcome this hump I find myself blocked by. I needed to really and truly break down the song I’ve been playing, to strengthen the skills that most need to be strengthened.

Heart of Stone

Cher, 1989

I am thankful for a new Lindsey Stirling song.

Love’s Just A Feeling

I tried to be the teacher, showing someone the proper way to play my violin, and boy were they in trouble.

Well, with me as the teacher anyway.

Winter is making one last appearance. The snow is falling. I am bracing myself for the possibilities. Snow is a pain, but it really is a beautiful pain.

The Grimmest of Grims, #HarryPotter #TGIF #FTSF

I love Harry Potter. I was late to the party though, on becoming one of the obsessed. I was twenty-four to be exact.

I often say,
like here on my About Me page,
that my three most visited topics throughout my mind and my writing are birth, death, and love. At the heart of most of what I write, those are the three subjects that are fueling it all.

The Harry Potter books are about the transformative effects of love, but it is also, in many ways, a book about death, if you look at the books critically. It’s about a villainous wizard who is so afraid of dying that he does whatever it takes to make himself immortal. I understand that, to a point.

It is easy for many young people, as I often hear, to believe that they are invincible and that death is so far off that it’s pretty well preventable. Maybe a cure to death will be found by then, they think. Maybe I can avoid all the darkness of the unknown of death, for myself or those I love.

But is that what we really want?

I had a discussion once, on a long drive home with a boyfriend, about death. There’s the science that’s working to put a stop to the inevitability of death. There’s the discussion about aging and suffering that often accompanies an aging human body. Then there was the added level of disability and medical conditions we both knew a little something about.

Did we want to live forever? We were several decades, ideally, from death. I don’t recall how this conversation came up.

Suicide is heard a lot more about these days, while stigma and misinformation still exist. A sudden or not so sudden end to a life, by choice is a frightening topic for most people. It’s a reality faced, by friends and families, for many of us.

Then there’s the fact that I never had my own brush with youthful carelessness or exuberance in the face of death, thought to be yet many many years down the road of life.

I lost dogs, several by our family’s admitted rotten luck. I’d lost a grandparent when I was ten. It didn’t get any easier with age to accept that I wouldn’t see certain people again.

While most kids are going through puberty I was also going through multiple surgeries. Then my little brother followed my medical path in a similar fashion. I then truly worried for someone else more than I cared and worried for myself. I wanted to take his pain away, add it to my own, still in progress.

As we got older, some of his medical issues became more serious and life-threatening and I feared death more than ever.

I can’t say I ever thought, right as I found myself on an operating table and about to do the paediatric anesthesiologist’s suggested countdown from one hundred, that I might never wake up. I just didn’t think it. I wasn’t worried, in some strange way. I can’t say now how I would feel. I have been lucky to avoid surgery for anything in many years, but I will likely face it again in the future, unless a cure for kidney disease is found in the meantime.

Now I am past losing grandparents. I just lost an aunt. I fear losing my parents. I fear the topic even being breached, as when my father brings it up in a nonchalant manner, as I know he is afraid too.

I live with a lot of fear about many things. I wish this weren’t just one more of those. It is inescapable and Voldemort is just a fictional character, but it’s his strangely relatable characteristics that I found most fascinating as I read, as fear of death is universal. It’s his deeds to avoid it, with how extreme and evil they are, that make him one of the greatest villains in literature, in my opinion.

I would like to write an essay of some kind, but it feels like such a huge undertaking. I feel like it would, by necessity, end up becoming a form of college term paper. I am not experienced with those.

If I did write it, it would be about the theme of death in the Harry Potter books.

Through the obvious, as I mentioned before, but also through J.K. Rowling’s use of other characters and symbols, such as ghosts and a black spectral dog, which when seen in the wizarding world, means death is near.

This isn’t my favourite of the Harry Potter films, by far, even if Emma Thompson is one excellent actress. I just include this clip to show you, if you’ve never read the books or watched the movies before. Though the third book, Prisoner of Azkaban, was one hell of a roller coaster ride when I first read it in 2008.

There’s some connection, a connective circle, as I mentioned dogs above, but I don’t know yet what it all is or what it all means.

I don’t know what that’s like when death looms ever closer, but I have come closer than many at my age and younger often do.

All these myths of black cats bringing bad luck and black dogs bringing news of demise. I will write about these things, as hard as they sometimes are to face, until the day I die.

This was
Finish The Sentence Friday
with host Kristi from Finding Ninee.

Read her feelings on the FTSF prompt for this subject if you can. They are lovely. As for myself, I have been away from this particular Friday prompt for a few weeks now, but I couldn’t resist coming back for this one.

Sunday: Another Sunday – Looking Back, #SongLyricSunday

For my first official

Song Lyric Sunday

I will go generic and perhaps follow the theme for next time.

Today is a flashback-to-20-years-ago sort of a day.

Well, it was 20 years ago today that I got my father’s kidney. For the last 19 years it’s been more of a Father’s Day for the two of us, at least in my mind, than the actual Father’s Day – our own special day, just between us.

I flashed back to a song from the mid 90s last night that I thought would fit:

Another Sunday – I Mother Earth

There is actually music going on in my basement, as we speak, but I thought this would be a little more fitting.

🙂

This sort of band “I Mother Earth” was one of the bigger rock/alternative bands of the mid 90s. Here in Canada, Much Music was the thing, and my brothers recorded the video and loved them. I tended to follow them where they lead, music wise, even with my own preferences, which did exist. They knew what was cool at the time.

This music was the backdrop for the hard times I was going through as a 12-year-old. I was feeling extremely unwell and was soon diagnosed with kidney disease. I think back on those years now. It all feels like someone else’s life, but it was all me. I remember certain songs, like this one, which take me back to those times.

“Another Sunday” lyrics

Thanks goes out to

Helen Espinosa

for her love of songs and their lyrics.

TToT: March Winds and April Showers – Lions and Lambs, #10Thankful

“April is the cruelest month, breeding lilacs out of the dead land, mixing memory and desire, stirring dull roots with spring rain.”

–T.S. Eliot

Think this quote has been taken to mean “taxes” more recently, but I like to take the entire quote at its original wording.

Okay, so it’s more snow than rain around here at the moment. Lousy April Fools’ joke if you ask me. That was two days ago you know!

I don’t have a lamb or a lion, but Lumos is still a feline. I’d hoped to have a humorous shot of him to include here, but I seem to have misplaced it.

From the sounds of things around here this week, lots of regulars with the TToT are having trouble coming up with 10 T’s. Mine are to follow, minus any photos this week I’m afraid. Ooh, except for one…because we were celebrating him this week. It was taken back at Christmas, but you get the idea.

🙂

As for the TToT, some are borrowing thankfuls from other members. I am scrambling, somewhat and after a week of feeling sick, for mine, but here goes nothing.

TEN THINGS OF THANKFUL

For Patty Duke.

The Miracle Worker, 1962

She died this week, but she is remembered, for me, as Helen Keller, plus all her work as a mental illness advocate.

For my younger brother’s existence, while celebrating his birthday.

He’s the best brother anyone could ask for, one hell of a musician, and the strongest person I’ve ever known.

Can’t believe this is the final year of his twenties. Due to some extremely unforeseen events since his previous birthday, we came close to losing him, or at least the “him” we’ve become so accustomed to.

🙂

On this birthday of his in particular, I am thankful for the brother I know, better than nearly anyone else.

For organ donation and the newest friend to receive a new lease on life.

My brother has had this gift given and is making the most of it for the last three years now, but now it’s been another person’s turn.

My family have known her and hers since she was only a few years old and since I was first diagnosed with kidney disease. It’s been twenty years, in fact, since our families met.

She has gone through more than many people, a lot in her life, and she is finally free after years of endless dialysis treatments.

The whole organ donation thing is, I fully acknowledge, a touchy subject. If you’ve never known someone who was truly in need, you can’t possibly understand what it means to be free of machines and fatigue and fear.

I struggle because it means someone lost their life. I don’t celebrate that. I only see the good that can come from something so awful. I will forever be torn, even though my brother and myself have and will probably benefit from organ donation more in the years to come, barring major medical advancements.

For a lovely walk, fresh air, after being sick and cooped up for what felt like days.

It was growing dark and all it was was a short walk down the block in my parent’s neighbourhood. My nephew loved tossing stones into the water that had accumulated there.

The wind was biting, but it was also refreshing. I needed the air to flood my recently so stuffy lungs.

For not being sick anymore.

I was sick and tired of all the aches, coughing, and the monster.

Ozzy Osbourne sings a line in one of his songs that I love about “being sick and tired of being sick and tired” and this is not totally gone away from my life, but after a bad cold finally vacates my body, I am often able to realize how happy I am to have one less thing to deal with.

For the return of my normal voice.

It sounded, for a few days there, as if a monster had taken over my body, specifically my vocal cords.

I hope to finally have another violin lesson. Unforeseen events, my feeling unwell, these have resulted in me only getting one lesson this past month or so. Not cool.

For old memories, nostalgia, and endless laughter.

The Things I’ve Seen and Heard

My brother and I listened to old tapes he is digitalizing. All the laughter was hard on my body, after the cold, but it also felt nice, like shaking off cobwebs in the corners of a room that has been shut up to the open for too many consecutive days.

For the passing of yet another April Fools’ Day, for another year.

I am the first one to advocate for more humour in the world, as was one of my 10 from last week, but the day set aside for jokes and pranks is more of a nuisance than a laugh for me now.

I am highly gullible. Although a lot of the jokes played by and on me in person were a thing of my youth, now it’s all on Facebook. So much so, that I may stay off of Facebook entirely next April 1st.

For baseball starting up for the 2016 season.

Today was the first season game and Toronto won!!! Keep that up boys.

And for this song.

Uneasy Me, #FTSF

“It’s not easy to be me.”

Superman’s Dead (It’s Not Easy) – Five For Fighting

Superman was always one of the last of the superhero stories I would choose. I was always more of a Batman girl. I don’t know how many Superman films I watched there for a while, but none of them stuck with me as being particularly interesting. I didn’t understand the whole backstory or even the definition or importance of kryptonite.

That’s why, when I read this week’s FTSF prompt, I froze in my tracks, unsure if I would write anything at all, have anything to link up with.

I looked up the meaning, refreshed my memory, but still drew a blank. Kryptonite meaning, basically, weakness and still I was coming up with nothing.

Come on, I nudged myself over the last few days. You’ve got to have a weakness. What is it? What would be the main one?

I am working on writing my memoir. It seemed like a perfect moment in time to start again, as I think back on the twenty years, exactly, that I was diagnosed with kidney disease as a frightened twelve-year-old.

Since that point I have been called brave and inspirational many many times. How did I do it? How was it that I managed to survive feeling so sick, dialysis, and surgery to have a transplanted kidney from my father?

I am not as strong as all those well-meaning family, friends, medical professionals, and acquaintances assumed. I don’t want what happened twenty years ago, what was only really a few years out of my whole life, to define me forever. I try to get past it, really, but I keep going back to it and writing my story down is a big part of that.

Sometimes I wonder if that’s even a good idea. Maybe I should just move on and look ahead. That’s what I am doing, but then I turn my head round and admit to myself that what happened during those rough months, all those years ago now, that stuff left its mark on me and I can’t honestly say I don’t look back in reflection.

My kryptonite is the past. It’s the affect a physical illness had on my body, my mind, the girl I was trying to grow into.

It influences my body image even now, as a grown woman.

When I was treated I was clearly under-weight and malnourished. I was lacking proper vitamins and minerals, things the kidneys are supposed to take care of.

I stayed stable on dialysis and I had the transplant. This got me back to a healthy state, but I went from being barely eighty pounds, maybe less, at age twelve. My puberty was hugely disrupted. I was not growing.

Once I had a working kidney, one being all you technically require, I began to gain weight. I gained weight as a side effect of more than one of the medications I had to go on.

I remember standing on our bathroom scale, realizing I was ninety-two pounds, and starting to panic. I wasn’t relieved I was gaining. I was horrified.

I was weighed every time I went on and off the dialysis machines. This was necessary, to monitor my fluid loss and gain, but it played havoc with my head. I was shown to focus on weight, at a time I shouldn’t have had to, when only months before I was pushed to put on the pounds.

Now, the weight was coming on abnormally quickly and I was visited by dieticians who went over the list of foods to stay away from if I didn’t want to gain even more weight.

So now I like my chocolate but I also like my fruit.

At Easter I love chocolate eggs, but come summer I go nuts eating strawberries, peas straight from the pod, peaches, and apples for weeks and weeks on end. They are really all I want to eat.

All in moderation. Diets don’t work. Or avoid some foods entirely?

I can list all the excuses in the book as to why exercise and weight loss hasn’t been easy for me, but I know I am not alone. I must keep plugging away at it, remaining mindful of it. I don’t want to make excuses, to use chronic pain or my blindness as reasons why I am now gradually gaining weight over time. I only get my kidney checked twice a year, but they still take my weight at the start of these appointments, and I am forced to look back and try to recall what the scale read six months before, to keep track, somewhat, of where I’m at. So although I don’t keep checking my weight on my bathroom scale every morning, I’m made to be accountable, every time November/April rolls around.

Yes, the meds have decreased, things are more moderate now, but the damage is done – floodgates have been wide open for twenty years. I deal with something so many people deal with, I know. Emotions also play a part and my psychological state becomes a factor.

Can I keep things under control? Can I not let the events of my past rule my present or influence the future?

My kryptonite are the stretch marks I’ve had (not from a pregnancy, like most women my age), but since I was on high doses of prednisone, when I was fourteen years old. I can feel the clear visible evidence of how it all began and I feel weak because I can’t keep things in balance as much of the time as I’d like, but that’s why I write about it all. I hope that part doesn’t make me weak. I don’t feel all that brave or inspirational and I don’t want the weaknesses I live with to bring me down. They do serve as reminders of the scars of my past and the toughness, as they’ve driven these bits of my past in deep.

Now I’m off to go eat a mango and some chocolate.

🙂

The brains behind this week’s FTSF is

Lisa Crisp Witherspoon

of The Golden Spoons.

Kryptonite – 3 Doors Down

And, as always, Kristi of

Finding Ninee.

Patience With Public Perception

Last time, on the

Redefining Disability Awareness Challenge,http://rosebfischer.com/2014/07/15/the-redefining-disability-awareness-challenge/

I wrote about my diagnosis of kidney disease:

The D Word!

Here’s today’s question.

***

Q: How has public perception of disability changed in your lifetime?

A: Okay, so I will try my best to look at this question with an optimistic viewpoint, as much as possible – because although progression doesn’t happen as quickly as I’d like it to, it does happen.

I don’t know if so-called “public perception” has changed all that much really.

Yeah, the optimism is coming…just wait for it.

🙂

All I mean by that is that although conditions are hopefully improving, the question of what the public thinks, feels, or knows logically or through education are all different questions.

I was born in the 1980s and so not that long ago, in the grand scheme of things. In that time, in the US there was the introduction of the Americans with Disabilities Act (ADA), which came on the scene six years after I was born.

Here in Canada, we have:

**The Charter of Rights and Freedoms

and

**The Canadian Human Rights Act

http://www.ccdonline.ca/en/about/

Disability is such a broad and all-encompassing term. It isn’t easy to lobby for every single disability out there.

http://www.ccdonline.ca/en/about/history

There’s a little thing called equal opportunities, which is becoming more commonly known in workplaces, but I still sense a lot of ignorance and discrimination, whether meaning it or not, by employers toward anyone with a disability:

I want to know my obligations. – Canadian Human Rights Commission

Right there!

The fact that the word “obligation” is used feels ugly. I read that and I already feel like I’m an obligation or a burden, just something mandated by the government and forced upon every unsuspecting company.

If so, well what’s wrong with that then?

I should be happy with that, right? The government is taking the necessary steps toward inclusion.

Laws may be the first step, but in many ways, they aren’t the most important one that will make the world a more inclusive place for everyone.

I believe terms such as “obligation” keep things just as focused on the negatives and downsides as my own negative tone of which I promise to keep adjusting.

I may come off sounding demanding and I am, but I am willing to do my part.

I am the first to admit that I am not always a patient person, like with this issue, but I also need to work on speaking up for myself and hopefully I can make it better for someone with a disability, thirty or fifty years from now.

Accommodations must be made, but until our world opens their minds and hearts and sees less differences, I fear this will never lead to the inclusion I dream of.

So what will it take to change the public’s perceptions fully?

Here’s a blog post my friend Steph, fashion and lifestyle blogger for women who are visually impaired wrote about that:

Observing 25 Years of the ADA – Bold Blind Beauty

I think Steph says something very wise in this post. She basically says that discrimination is everywhere, from people who don’t live with disabilities, but disability does not discriminate.

Sure, it’s easy to live in fear and denial. Believe me, I am extremely familiar with these things in my own life.

Fear keeps the public from wanting to take too close a look. If society keeps people with disabilities kept separate in their own schools and clubs and then, even worse, hidden away at home, they won’t have to deal with the fact that we do exist and deserve to have all the same opportunities for work and life.

However, the denial that goes along with this won’t protect them when disability comes into their own lives.

Laws are important and all well and good, but perceptions are a little more difficult to control this way.

You’d have to really get out there, to ask people what their true feelings are on disability, to follow them through their daily lives to see how they might react to certain situations.

I perceive myself one way, but I can’t control how other people will perceive me.

I will still continue trying to make strides in this arena though because it matters.

I do believe things have improved, in the thirty years since I was born – don’t get me wrong.

See, I can be optimistic. It’s just a little more complicated than that.

Sure, I get angry. I grow frustrated that the public just doesn’t understand, but I am very willing to keep the dialogue going.

Anger can work for you. It has propelled some of us in positive ways.

We do progress, as a species, even if we backslide now and again.

I do not downplay or discount all I have mentioned above, all that has been put in place since I was born thirty-one years ago. I even like to think it was, partly thanks to my appearance on the scene, that these leaps forward were made.

🙂

Too presumptuous? Okay, perhaps.

But in and amongst the frustration and the fear, I do have hope. Most people in the public are curious and kind. They don’t purposefully go out of their way to put up roadblocks for those of us with disabilities. It’s just that we need more than pity or good intentions. We need awareness and action.

I will admit, I’m not the first person to know all about public policies and government initiatives, but I do know about what it’s really like to live with a disability, in a world where I am in the minority.

The public does want to move beyond the fear and the denial; or at least, that is what I tell myself.

We must focus on what we can do, disabled or not, instead of what we can’t.

***

What can I do to help this process along? I ask you, the public!

Public…are you there?

(Crickets.)

🙂

Hmmm. Awkward!

Well, in the meantime…check out:

The Redefining Disability Awareness Challenge on Facebook

And maybe fifty years from now we won’t need to have a Facebook page at all. Maybe disability won’t be such a big deal any longer. Or, maybe, awareness will always be a necessary and an important thing? What do you think?

Next week’s question is a variation on this weeks’:

How has your perception of disability changed in your lifetime?

Oh, how indeed.